Happy Mother's Day

Dear Georgia,
Today I get to celebrate being a mom because of you.  I am one of those people whose known her whole life I've wanted to be a mom, growing up I was indecisive about a lot of things but never about desire to be a mom. 
Someday if you choose to have children you'll understand the way I love you, it's impossible to fully grasp until that day arrives.  All of the cliches are true, I love you so much it hurts and there are times when I think I could literally eat you up! 
I am so proud of you and who you are becoming, you are caring and kind, have strong opinions, love to laugh and you've got a style all your own! 
I am fortunate to have had an incredible role model, grandma Claudia taught me so much, helping me to figure out who I wanted to be, what things really matter in life and she always gave the most unconditional love.  I can't promise to be perfect, but hope I can be to you what she was to me.  I know that I got more from her in 19 years than some get in a lifetime.
There will be times when I think I've run out of patience or you think I am the worst thing that's ever happened but know that I love you my girl, every minute of everyday.  My first wish for you will always be health but beyond that I want you to be happy, whatever that means to you.  I will be here to help you achieve your goals, be an ear to listen and to help you gain focus when the world doesn't seem fair.  I will love you no matter what.  I feel so lucky to have you has my daughter Georgia, I love you so much.

Love,
Mom

Luau!

Today was absolutely beautiful in Seattle, the perfect day for Lauren's luau birthday party!  Thanks to Auntie Leslie for keeping the party small so "GG" could attend, she had a blast!  Happy birthday Lauren, we love you sweet girl.

 Double Trouble

 Grammy & Georgia

 Blake & Lauren

 The birthday girl

TWO!

Happy second birthday to the sweetest niece an auntie could ask for. You're mama and I can't wait to see you and Georgia grow up together, with just under six months between you, I think you'll both give us a run for our money!   We love you so much Lauren!

Tricky

I'd just barely hit the "publish" button on my last blog post when the phone rang, it was the SCCA calling about the labs Georgia had taken earlier that day.  We checked her labs again this week because her Sirolimus level (big immune suppressant) was running high.  The Sirolimus level was still pending but there was a bit of concern around her liver function tests.  As we talked about the numbers and what they could possibly mean I could feel my heartbeat accelerate, in an instant I was panicked and was wondering if this was the world playing some sort of joke on me, as if laughing saying, "were you just saying something about letting go?" 
The possibilities are these, her body is still working on getting rid of the nasty stomach virus she had, possible but unlikely that her high drug level is effecting it or GVHD of the liver.  In my heart of hearts I don't think it's GVHD but it's a very scary idea, GVHD in the liver is very serious.  Labs are tricky, they only tell part of the story, then you have to go hunting for the rest.  The plan for now is to have her labs re-checked early next week and go from there.
After I hung up I realized that we needed to get ready to go to our Gilda's Club fashion show meeting.  With my heart still pounding I went in to check on Georgia who was still napping, I woke her up and was immediately irritated that she had to miss out on sleep to go.  The last meeting we'd gone to was a bit overwhelming for Georgia and I didn't want to put her in that situation again.  We arrived at the meeting and Georgia seemed to perk up, once she saw our friend Anna walk through the door she was all smiles - finally another kid!  Turns out Georgia had a blast at the meeting, goofing off with Anna and practicing her runway walk.  After our first meeting I was starting to second guess our choice to have Georgia in the show simply from a shyness standpoint, last night she had a ball and she's already asking when she gets to see Anna again.  The meeting last night was exactly what I needed to get my mind off of things and just see my girl having fun, ah life, it's so tricky.

Anna & Georgia

Let me just say, Anna is a natural, poses, struts down the runway - she's ready! 

I think Georgia is warming up to the idea of walking the catwalk. 

Georgia and I will walk together but here the girls are practicing together.

Let go and begin

I've never thought of myself as controlling, in fact quite the opposite.  It's funny how life experiences can show you different sides of yourself, ya, life can be a real riot.  Since Georgia got sick I could feel things getting out of control, and as hard as I tried, I didn't get to control how things would go.  I have done my best to pick my battles and fight for what I thought was best for my daughter but I have certainly struggled with life not meeting my expectations.  It's hard to wish for something and feel like you're doing all that you can to help make it happen and it doesn't.  Georgia's eating and weight gain have felt like my job, I like to do my job well.  Over the course of the last year I have been working on letting go, of expectations, for this process for Georgia and myself.  I have come to realize that letting go is an art form, not easily achieved and something that requires tremendous practice.
After a recent bout with the stomach flu Georgia's prednisone taper was pushed back.  Over the weekend her eating returned to normal and her labs looked good.  On Monday I talked with our PA at the SCCA, we talked about if Georgia was ready to start her taper.  The original taper was supposed to drop her dose down every five days and our doctor didn't feel that it was necessary to stretch that out but said to do what ever I was comfortable with.  I told our PA, we don't need to be the fastest or the best, I just want to do what it right for Georgia's body.  We decided to drop the taper down every seven days which will last approximately eight weeks.  Today we started, 0.2ml less than what we've been doing, a tiny drop that feels like a huge step. 
As life does, I am provided with another opportunity to fine tune my skills of letting go.  My hope is that Georgia's body, and more so her gut is ready to remain healthy and fully functioning without prednisone... as with everything in this life, all you can do it take it one day at a time.  Today I decided to let go of what this taper should look like, so today we begin. 

Off to a good start!

This weekend was filled with cousins playing, pre-birthday celebrations and a whole lot of fun.  The sunny days made for some great outdoor play for Georgia, Blake and Lauren all of which made me happy to tears.  Thanks to my sister for hosting a family birthday dinner last night!  Today Georgia gave me a big hug and said, "happy birthday to you" then we headed to the park, tonight Brian and I are heading out on our second date in 18 months!  So far 35 is off to a good start!

Slow & Steady

Things here have been busy, I wish I could say fun-busy but I can't.  Last Monday we had our monthly clinic visit which went fine, Georgia's labs look good and she'd gained weight - finally 26 pounds!!  We talked about what activities Georgia would be doing this summer and about her upcoming fashion show that a few of her doctors will likely attend! 
The next day we met my sister and Georgia's cousins at the zoo - how normal, I loved it!  Seeing the kids run and play together makes me so incredibly happy.  By that evening Brian and I were talking about the Prednisone taper that would start the following week, we're ready, I thought.  Georgia wasn't very interested in dinner and told me her tummy hurt, then out of the blue, she threw up.  All of a sudden it was clear that the "food poisoning" we thought Brian had a few days earlier was a stomach virus.  That night was rough, Georgia was really sick and feeling miserable.  Brian's bug lasted 2-3 days so I was hopeful this would pass quickly.. not the case for an immune suppressed kiddo.  A week went by with improvements but slow ones and two things were clear, Georgia didn't weigh 26 pounds any more and we wouldn't be starting a Prednisone taper. 
The last several days have been much better and her eating has almost returned to normal.  After talking with her docs and having labs done we decided to push her taper out a week at least, we'll be touching base on Monday to see when we'll start.  Likely her taper will now drop down every 7-10 days instead of the current 5 day drop. 
All in all this feels like an unnecessary sucker punch but I know she will get back to 26 pounds (and beyond) and that the taper can wait.  Just a reminder of slow and steady, that's how this goes.

 Georgia & Lauren at the zoo

 Blake

So happy to see her cousins!